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It’s World AIDS Day. Does Anyone Care?

On March 5, 1995, the day I turned 30, I admitted my then-partner Shane Sawick into the hospital. He would not come out alive, dying just two weeks later, on March 22. While AIDS was the war he battled, he was ultimately done in by a skirmish with PML (Progressive Multifocal Leukoencephalopathy), a rare but usually fatal disease, which quickly took away Shane’s ability to speak, move, or even blink at will, though his brain continued to think, and process, and feel. It was devastating to watch a loved one undergo such a debilitating experience, and yet that act, of being both lover and caregiver, thoroughly transformed me as a human being. Indeed, I would not be the husband, father, writer, or person that I am were it not for that period of crisis during which my partner and friends died. As we head towards World AIDS Day, I find it perplexing that few seem willing to embrace, or even mention, the epidemic which so greatly impacted and altered the LGBT community. What is it about that era that frightens us so?

The easy answer might be that disease and death make people uncomfortable, which, to some degree, is understandable. Prior to Shane’s death, my best friend of eight years and I were inseparable (I’ll call him Pete.) At the time, I couldn’t have imagined a better friend. Pete made me laugh, kept me company, and ushered me through my West Hollywood “coming out.” Once Shane got sick, however, Pete disappeared. He never called, or came to visit us in the hospital, despite knowing that I was there 24/7. Whenever queried by friends as to his absence, Pete would say, “Oh, you know–me and hospitals. I just don’t like the idea of sickness.”

It wasn’t until the day of Shane’s memorial that I next saw Pete. He came up, noting “Great service!,” before the next words came out of his mouth: “Wanna hit Happy Hour later?” Needless to say, I chose to end that friendship, as well as others in which people could not grasp the emotional magnitude of what had happened to me, and others like me. The depth of my experiences caused a change within, which required a new support system willing and able to tackle the “hard stuff,” no matter how unpleasant.

For some, the era of losing friends and loved ones has been difficult to revisit, due to the emotional toll taken. Many have gone to great lengths to separate themselves from the pain, moving from the most-hit urban centers to smaller, more rural towns. Others have gone into emotional hiding, losing themselves in drug or drink, or in simply shutting down, so as not to feel the ache of such loss. And some have, by necessity, focused on rebuilding their broken circle of friends.

New causes, such as marriage equality, have replaced AIDS as our community’s priority, and it is hard to argue that rallying for wedding cake isn’t more fun that protesting for HIV drugs. Still, we should not have to choose between the two.

These days, activism for many means little more than clicking “like” on a Facebook post. While thousands stepped into the streets in the aftermath of Prop 8, we’ve not seen anything on that scale for HIV/AIDS in years. At what point did we become complacent? Is having a drug that makes the disease “manageable” really all we want? What happened to a cure–or a vaccine?

Today, people still die from AIDS. While drug advancements have substantially decreased that number, it has also created the false-belief that contracting the disease is essentially meaningless. To some, taking one pill a day is an easy trade-off to having to wear condoms.

Most disturbing, however, is the sheer number to whom AIDS just doesn’t matter, having relegated it to a page in history. When I mention having lost a partner or friends, I’m most often met with a blank stare or a cursory nod, with no real emotional acknowledgement of what that time meant, and continues to mean.

During the AIDS crisis, the LGBT community rose to the occasion, stepping in to take care of our own when the government, pharmaceutical companies, and other organizations couldn’t–or wouldn’t. LGBT people exhibited incredible bravery, tackling huge monoliths with acts of daring creativity and passion. Were it not for our take-no-prisoners approach, we would not have the HIV drugs we do today.

The crisis temporarily brought together both genders, as women stepped into vacant leadership roles and helped those stricken by acting as caregivers. Today, that gender divide has returned, with little reciprocity from gay men for the causes dear to lesbians, such as breast or cervical cancer. In many ways, we’ve gone back to being strangers, with a debt left unpaid.

Other communities, devastated by tragedy, have managed to turn such markers into rallying cries, and the LGBT community must find a way to do the same with AIDS. Just as the Jewish people dealt with the Holocaust, and the African American community responded to slavery and the civil rights struggle, so too must our community find a way to embrace that era, fully honoring both those we lost and what we gained.

For we did gain much. We learned that, far from being the weak and passive individuals many of us had been stereotyped, we actually had strength, passion, and guts, and we fully demonstrated that to the world. We took on “the powers that be” and created real, tangible change. We literally bloodied ourselves for the cause, and yet today, speaking of AIDS feels almost taboo.

Does that have anything to do with the disease being sexually transmitted? Having worked so hard to combat the myth that being gay is to be “sick,” did the emergence of a sexually transmitted disease take us back to a place of shame? Does that shame still linger?

To be clear, I am not remotely nostalgic for the days of the AIDS crisis. I lost too many, and it hurt too much. But at the same time, I’m thankful that I was able to play a part in helping to educate others about HIV, through my work at AIDS Project Los Angeles. I’m grateful to my dear friends who allowed me to be with them during their final days. I’m profoundly changed, for the better, for having ushered my partner Shane to his death. And I’m forever in awe of the efforts our community took to respond to the crisis in unimaginably creative and lasting, impactful ways.

I just wished others cared as well.

Kergan Edwards-Stout’s debut novel, Songs for the New Depression, was loosely inspired by his partner, Shane Sawick, and his experiences during the AIDS crisis. It won the 2012 Next Generation Indie Book Award in the LGBTQ category, and was shortlisted for the Independent Literary Awards in the same category.

While I am not thankful that the AIDS era happened, I am thankful for what was learned and how the gay community transformed—both in our own eyes as well as the eyes of the rest of the world. Thank you for this article, and for being the man you are today. I know Shane is looking down upon you, and his heart is filled with love and joy.

Hi Kergan.
Thank you for writing this article… and from where I sit, the answer to your question has and always been Yes. Yes I do care. For those I love, those I too, have lost. Though not a partner or lover, many dear friends back in NY days that left my life far too soon….I must say that when I finished reading, my thought was this. You embody your tagline. Words well chosen. You are so creative in your writing, and your passion and compassion are in equal measure when I think about who you are.
Vanessa.

Hi, Kergan
Bob from Clearwater again. Your article really hit home with me. My story is a lot different but no less emotional to me. I was married and deeply closeted through the major portion of the AIDS crisis. It did not hit me until my gay first cousin, with whom I shared our secret, as teenagers, died of AIDS in 1994. It took me 4 more years to get the courage to come out, the scariest and one of the best moments of my life. I have continued to have what I call “survivor’s guilt”. I felt that I had done wrong by my community by being so hidden and unaware. These days, I purchase any DVD which relates to the crisis, such as “Word is Out”, “Silver Lake Life”, and “We Were Here”. I’m anxiously awaiting the opportunity to acquire “How to survive a plague”.
I’m not doing this to remember, because I wasn’t “there” in body or spirit. For me, it’s to learn and to understand. And then, to make sure I never forget.
I miss my cousin dearly. It’s sort of a very small way to say “I wasn’t there for you, and I’m sorry. But I’ll never forget you.”
Bob

Bob, Thanks so much for sharing more of your story with me. I completely understand where you’re coming from, but please know that you were just doing the best you could, with what you had. What is important is what you’re doing in the “here and now.”

One of the Best Books of the Year!

Named on multiple Best Books of the Year lists and as a finalist in the Next Generation Indie Book Awards, Gifts Not Yet Given is available now in paperback and e-book on Amazon.com, BarnesAndNoble.com, iTunes, and fine booksellers everywhere.

Welcome

Kergan Edwards-Stout is an award-winning director, screenwriter, and author. His collection, Gifts Not Yet Given, landed on multiple Best Books of the Year lists, was named a finalist in the Next Generation Indie Book Awards, and is out now in paperback and e-book at your favorite bookstore. His debut novel, Songs for the New Depression, won a 2012 Next Generation Indie Book Award, was shortlisted for the Independent Literary Awards, and was named one of the Top Books for 2012 by Out in Print and other book review sites. It also received a starred review from Library Journal. He has contributed to the Huffington Post, Bilerico Project, and LGBTQ Nation. His greatest honor, however, was to have been named one of the Human Rights Campaign's 2011 Fathers of the Year, as his partner and children nominated him. He is currently at work on a memoir.